20 November, 2012

behavior vs. ability

Some people do different things or need different things from the average person. (Or the imaginary average person.) Other people have to decide how they feel about that difference.

1. Should the average person accept that some people do this different thing, and not be mad about it? Should institutions and communities try to adjust to meet the needs of these people?

2. Or should the person who's different change their needs to be more like the average person's needs, change their behavior to draw less discrimination and aggression, and be held responsible for any ways they get hurt if they fail to change?

As a person who does and needs some different things, I feel like option one is the right answer in most cases, unless the different thing someone does is being a serial killer. The majority of the time I feel like it's just a more interesting and efficient way to live.

However, usually a minority group's right to option one is supported or denied on the grounds of whether they can help being different or not. If you want someone to be responsible for your bad behavior toward them, you argue that they are being different on purpose.

One example I can think of is people who are against gay marriage and go around saying, "But gay people already CAN get married! They can marry the opposite sex!" This puts the blame on gay people for not changing our needs to match the majority. I also saw someone who, when asked if gay people were allowed in their religion, said that we probably wouldn't be interested in joining anyway. This implies that if people wanted to not be excluded for being different, we just wouldn't be different.

There is also the whole idea that poor people are poor because of some kind of moral failing and everyone who tries not to be poor isn't. Therefore not helping people who are poor is supposed to be tough love encouraging them to straighten up and become rich.

When people argue for option one, they say that the difference is involuntary. "I was born gay. If I could take a pill to be straight I would. The idea of kissing a man makes me want to throw up." Etc. What I think about this dichotomy isn't the point because it's so universal. If you try to talk about this stuff in other ways most people will not even know what you're saying. When you say that someone can't help being different, you're almost always indicating that you're on their side.

Therefore you can kind of tell what side someone's on just by how they talk about someone who is different.

Medical and mainstream culture descriptions of autism are steeped in option two language. They are very superficial descriptions of things Autistic people do, with the implication that Autistic people do these things simply because they like them, or for no reason at all.

1. "Autistic people stim" not "Autistic people stim BECAUSE" or "Autistic people have motor/sensory stuff going on that causes them to move like this or be soothed by doing this."

2. "Autistic people avoid eye contact" not "It scares Autistic people to look at other people's eyes."

3. "Autistic people avoid touch" not "Some kinds of touch can scare or hurt Autistic people."

4. "Autistic people have 'splinter skills' and strong interests and like to do the same thing over and over" not "Autistic people can learn specific things better than general things, and see number five."

5. "Autistic people like rituals and are resistant to change" not "Autistic people do better when they are in situations where they know what's going on and what's coming next, to the extent that some people can't handle life at all when it's not like that."

#5 has been on my mind a lot lately because the last few months have involved me having to do a lot of unplanned things and make a lot of sudden transitions. This has reduced my quality of life and my ability to do other stuff, which is clearly because I have a disability that makes it hard for me to emotionally and cognitive cope with surprise and change. However some people would say it's because I want to make out with train schedules.

Some OTHER people would probably say that because professionals don't know exactly why Autistic people do certain things (the reasons I'm giving are from Autistic cultural/anecdotal knowledge, not from books), they have to phrase everything in terms of what an Autistic person chooses to do. First of all, the reason professionals don't know why Autistic people do things is because they usually only study how to to make Autistic people not do things. I think their phrasing shows what they are interested in knowing not what they're able to know.

But I also I just fail to believe that people can't say, "It seems like Autistic people have to do this, for some reason."

I made up an imaginary mobility impaired person and I'm going to tell you a slightly unlikely but not absurdist story about his life. People are a little less likely to blame SOME mobility impaired people for their problems, which is why I think this story helps illustrate my point. But I'm also sure that it has literally happened plenty of times.

An imaginary kid named Sidney learns to walk at the usual age, but he always sits down crying after a few steps. Even when adults try to encourage him, the same thing happens. Sometimes they can bribe him with candy to walk across the room, but he cries while he's walking. When Sidney gets old enough to talk, he confirms that walking more than a few steps really hurts.

Not finding any immediate solutions, Sidney's parents continue to push him around in a stroller. Eventually they get him a wheelchair so he can be more independent. As he grows up, a few things change about how Sidney gets around, but since he is an imaginary person I won't go into detail. The short version is, he grows up to be an almost full time wheelchair user.

No one is able to trace Sidney's problem to a genetic condition or an injury to his legs or brain.

If a doctor describes Sidney's disability as "preferring to use a wheelchair and avoid walking," this doctor is not on Sidney's side. The description fails to acknowledge Sidney's experiences and implies that he's irrational. It doesn't encourage healthcare providers to try and help Sidney with his actual problems--in fact it may mean he can't access services he needs. It doesn't encourage other people to accommodate Sidney's wheelchair. It doesn't encourage Sidney to feel confident in speaking up against injustice, seeking help, and just taking care of his own body.

In many ways, this description of Sidney's disability can physically, emotionally, and socially hurt him. If the doctor says he wants to help people like Sidney, Sidney better watch out.

4 comments:

I so LOVE when you write. It just pushes my brain to look at situations that I probably SHOULD be thinking about all the time, but for whatever reason...brain-laziness, or schedule, or denial, or whatever...I don't. And because I love reading what you write I end up pushing my way through the things that don't immediately make sense to me in order to find your points and see whether or not I agree with them.

Only this time I didn't really have to do that because I found myself just nodding along with your points and appreciating the ways in which you made them. I'd like to share this from my Facebook page, if you don't mind.

I'll check back for a reply, or if you want to give me a yes/no there, I'll obviously see it quicker.

Loved this, "the reason professionals don't know why Autistic people do things is because they usually only study how to to make Autistic people not do things."

What I started thinking about was the whole range between being completely unable to do something and preferring not to - like being able to do it for a short time, or having to trade in energy for other things to do it. And how people can't accept that the *range* exists, how they want to peg you as one side or the other: either you can therefore you always must, or you can't therefore you never will.

Often there *is* some choice. Some people who use wheelchairs can walk (some) but the chair is a big improvement, a choice to increase your abilities. Or like glasses. With autism maybe you *can* use the government procedure to get a passport (so you don't *need* an accommodation for something unusual like that) but at the same time you really do need an accommodation in day to day things.

I have never been permitted an accommodation for anything in any recognized way, and only recently I'm starting to allow myself to think what it would be like to be accommodated and not have to go against my natural way all the time. It's kind of exciting.

PICTURE NOTE: as a lot of us probably know, Photobucket has recently stopped allowing people to hotlink images. For the first few years I was using this blog, I used Photobucket to host most of the images, so now they will not be visible! Until Photobucket goes under, as I imagine it will, you can at least see the images by opening them in a new tab.